Showing 151 - 160 of 856 annotations tagged with the keyword "Patient Experience"

Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Collection (Essays)

Summary:

Perillo's essays offer a lively, variegated view from the wheelchair of a woman with multiple sclerosis who is also a naturalist, an outdoorswoman, a wife, and an award-winning writer.  Not all of them focus on her condition, though observations about living with the disease occur in most, and are thematic to some.  Most are also laced with wry humor.  One comes to see in these sketches from the Pacific Northwest how full and rich a life it is possible to live while also fully acknowledging and even lamenting the loss of mobility.  She invokes Thoreau several times, and her work may be easily situated in his tradition of personal, reflective essays on the natural world.  For her, the natural world extends to the world of the body, linked as it is with the bodies of all living things.

            

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Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Anthology (Essays)

Summary:

As explained in the succinct yet thorough introduction by co-editor Kimberly Myers, an international conference on the topic of "The Patient" was convened at Bucknell University in Pennsylvania in 2006. This collection of essays, which range from personal experience to scholarly literary critique, results from the conference presentations.
 
Of the ten essays, four concern personal or familial experience of illness. These four cover a vast range: literature and disability specialist Kristin Lindgren describes her story of the elusive diagnosis of chronic fatigue syndrome and her coping skills; medical humanities and medical ethics expert Carol Schilling offers a poignant narrative of her experience as a mother of a previously healthy, athletic son who suffers a cervical spine injury from a skiing accident; Gayle Whittier places the story of her daughter's disability amongst a trio of nonfictional and fictional narratives of disability and illness; and renowned poet Tess Gallagher explores her relationship with and caring of her mother who has Alzheimer's disease. These essays, written as they are by women steeped in literature and writing, are not merely chronicles; rather they are infused with commentary on story and the meaning of life as story, journey and relationship.
 
The other six essays are likewise diverse and range from cultural/political studies from the Navajo to the Irish (which includes literary analysis of works by poets Eavan Boland and Nuala Ní Dhomhnaill), to insightful critiques of literary works such as  Hjalmar Soderberg 's Doctor Glas, Lauren Slater's Lying: A Metaphorical Memoir, Brian Clark's Whose Life Is It Anyway?, Alejandros Amenabar's film The Sea Inside (Mar Adentro), and George (Marian Evans) Eliot's Janet's Repentance.

Consistent with the nature of medical humanities, the essays cross boundaries. For example, Whittier weaves her experiences as a mother of a disabled child with reflections on embodiment and literary critique. Gallagher compares the notions of time in poem-making with the necessity to live in the moment when caring for a loved one with Alzheimer's. She notes: "Of the written arts, poetry is most responsive to the moment and so coincides with the condensed time frame of those with Alzheimer's - which oscillates between the distant past and the present moment." (p. 71) Schilling tenderly writes of her family (for an illness strikes not just the patient): "We live the best lives we can, folding each of our stories into one another's." (p. 40) Diedrich explores not just the (at times infuriating) play with deceit in Lying, but also examines the ways in which patients lie and medical language obfuscates illness. She further explores, with great insight, expectations: of literary reviewers, patients and physicians.

 

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Wit

Edson, Margaret

Last Updated: Sep-07-2010
Annotated by:
Donley, Carol

Primary Category: Literature / Plays

Genre: Play

Summary:

Wit takes place in a University Hospital Comprehensive Cancer Center. The main character, Vivian Bearing, Ph.D., is a John Donne scholar who has stage IV ovarian cancer. Much of the action takes place in the last few days/hours of her life, although flashback scenes to weeks, months, even years before are interspersed effectively throughout the performance.

Bearing has lived an isolated life. Her love is her teaching and research. She is a stern taskmaster, perhaps "non-humanistic" in her approach. Similarly, she faces doctors and a medical system that emphasize technique over caring. She does find, in the end, compassion from a nurse who prevents the medical team from carrying out a CPR (cardiopulmonary resuscitation) attempt that she did not want.

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Lucy

Gonzales, Laurence

Last Updated: Sep-07-2010
Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Lucy is a novel named for the female hybrid offspring born of a bonobo mother and human father, a creature called, at various times, a "humanzee" since the bonobo, a great ape found in the Congo in Africa, is occasionally referred to as a pygmy chimpanzee. The result of artificial insemination by her father, Donald Stone, a British anthropologist in the Congo with aims to improve the human species, Lucy is a very human looking 15 year old girl.

The novel begins in medias res when Jenny Lowe, an American primatologist whose camp is near Dr. Stone's, is awakened by the sound of gun fire from nearby insurgents.   She goes to Dr. Stone‘s camp, finds the anthropologist and an adult female bonobo lying on the ground, both dead from gun shot wounds. Near the two bodies is a living teen aged girl, Lucy, whom she rescues and manages to spirit back to her home base, Chicago, where Jenny‘s friend and lover, Harry Prendeville, a charismatic surgeon, awaits her. Lucy enrolls in high school, her genetic heritage kept secret from all save Jenny who discovers -- in one of several nods to Mary Shelley's Frankenstein -- Dr. Stone's notebooks.

Lucy meets and becomes best friends with Amanda Mather, a classmate (this relationship is far from clearly a strictly heterosexual one) and becomes the state wrestling champ because of her bonobo-inherited skill, strength and speed. When Lucy contracts a viral disease that bonobos, not humans, acquire and her secret is about to be exposed (Jenny, Amanda and Harry now all know), Lucy does what all 15 year olds would do in 2010 (the book is set in present time) - she outs herself on Facebook. (O tempora, O mores!)

The novel now enters the accelerated phase of denouement with expected and unexpected reactions from TV, the violent right (think Mickey the Gerund in Cast of Shadows in this database), Congress and the public. Without revealing too much plot as a spoiler, suffice it to say that a governmental scheme to abduct Lucy for the purpose of NHP (non-human primate) experimentation becomes a reality with devastating consequences that allow for a thrilling read with its share of tragedy and triumphs and ending with an unusual yet fulfilling conclusion satisfying for most concerned, especially Lucy and those who love her.

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Annotated by:
Spiegel, Maura

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

The story follows the final twelve or so hours in the life of a 62 year old widow, emblematically named Dante Remus Lazarescu, (Ioan Fiscuteanu). Suffering with stomach distress and a terrible headache (eventually diagnosed as a subdural hematoma and late stage liver cancer), he spends his last night being shuttled by ambulance, or rather by an ill-equipped van serving as ambulance, from hospital to hospital, unable to secure the emergency surgery that would save him. The hand-held camera and long uncut takes -some are six or more minutes- give the movie the feel of unfolding in real time. In places, it has the look of a documentary, and it has been compared to Frederick Wiseman's Hospital (1970).

Before the odyssey begins, we meet Mr. Lazarescu in the cramped, unkempt Bucharest apartment he shares with his three cats. Of his circumstances we learn that he is a retired engineer whose only daughter has emigrated to Toronto, and that despite having had ulcer surgery years earlier, Mr. Lazarescu drinks heavily. In his every encounter -with neighbors and with a string of doctors- he is reprimanded for his drinking, implicitly or explicitly blamed for his ill-health. From the television blaring in his apartment we hear news of a truck gone out of control that has rammed a tourist bus. Casualties from the accident are taxing hospital resources, which accounts in part for why this ill-smelling elderly man who appears to be drunk (but turns out to be having a cerebral bleed) is a low priority, although this doesn't account for the callousness with which he is treated by much of the medical staff.

The most significant relationship in the film is between Mr. Lazarescu and the ambulance nurse, Mioara (Luminita Gheorghiu) who shepherds him throughout the night. Almost everything we know about her is what one knows from watching someone at her job; in Puiu's hands, this vantage turns out to be richly informative. (Ms. Gheorghiu's body language speaks volumes.) Mioara and Mr. Lazarescu hardly speak to one another; they don't "open up" to one another or have a "meaningful moment," nothing to compare, for example, to the Popsicle scene between the nurse, Susie, and patient, Vivian Bearing, in Wit (see annotation). The power of the relationship in this film is in what is not overt, but what is palpable nonetheless -that Mioara's presence means very much to Mr. Lazarescu, and that doing her job includes letting him know that she is standing by him, that he is the priority, the only priority. Mioara staunchly meets the irascibility and chastisement of various physicians in her efforts to advocate for her patient as he is passed off from one hospital to the next.

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The Man with Night Sweats

Gunn, Thom

Last Updated: Jul-27-2010
Annotated by:
Coulehan, Jack

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

The theme of this book of poems is life in a time of deadly plague. The author depicts his world ravaged by illness. Some of the poems are quiet love songs for others, for the world and its delights, a world turned upside-down by the ravages of AIDS. Many of the poems are elegies for friends who have died in the epidemic.

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Letters to a Stranger

James, Thomas

Last Updated: Jul-25-2010
Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

Letters to a stranger is a slim volume of poems by Thomas James ((1946 - 1974) posthumously collected and published in 2008 by an admiring reader/ critic, Lucy Brock-Broido. James died by suicide in 1974.

There are 54 poems in all. Forty-one of them were first published in 1973 as James's only published book of verse, Letters to a Stranger. Ms Brock-Broido has collected 13 more from various small magazines. Most have a faint formalistic ring to them with rhymed triplets (a-x-a) predominating.   Preceding the poems is an introduction by Ms Brock-Broido, an introduction that can only be called unusually confessional. (In his characteristically succinct diction, series editor Mark Doty calls it "a love letter, a biography and exorcism all at once".) For subjects, the bulk of the poems have, as we call a type of educational conference in medicine, morbidity and mortality. Indeed, the book might perhaps have been more appropriately entitled "Intimations of morbidity and mortality". Many of the poems are graphic.

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Summary:

This guide identifies short film clips designed to support “Cinemeducation,” word and method both coined by the editor Matthew Alexander. The editorial team consists of three family therapists--two psychologists and a social worker—with input from 26 other psychologists, behavioral scientists, and family physicians—all American, with the exception of one Brazilian. Most contributors train residents in family medicine. Both more and less than a scholarly treatise, this book is predominantly an annotated index.

Thirty short chapters are devoted to various subject themes: chronic illness, sexual behavior, aging, substance abuse, research, and medical error. In a paragraph or two, the clinical problem is outlined, then subheadings introduce specific, related keywords exemplified by the scenes selected. The plot and main actors of every film are summarized briefly at its first mention; a single movie can be cited in several different chapters. Each clip is similarly described and located precisely within the film (minutes and seconds).

In this manner, 125 films are parsed for 400 scenes, ranging in length from 1 to 6 minutes.  Most are Hollywood films, released since 1980. Questions for discussion accompany each film clip. The consistency and concise descriptions are admirable, but, sadly, the year of release is not supplied. 

A few chapters break from this format. One discusses aspects of technology. Another attempts evaluation of this teaching method through a ten-year retrospective survey of physicians who had been exposed to films in residency. The response rate was 60% but a fifth were rejected because the respondents could not recall the use of films. The remaining 48% who could remember the use of film clips found the method memorable, fun, and effective; however, they thought it would benefit from more context and amplification.

Appendices point to similar resources and more films under other keywords without details. This database is cited by URL without any description.

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Annotated by:
Bertman, Sandra

Primary Category: Performing Arts / Film, TV, Video

Genre: Video

Summary:

This groundbreaking international film documents the positive impact of art and other creative activities on people with Alzheimer's disease. The film's intention is to change the way we look at the disease.  It does just that.  Brilliantly.

Narrated by the actress Olivia de Havilland, the film opens with a 96 year old woman reading classical music as she's playing at the piano. Her music becomes gentle background sound track for the first vignette, a group of people intently viewing and commenting on Seurat's canvas, "Sunday in the Park."  From their intense concentration and voiced observations, one would never believe this was a group of nursing facility residents on an outing to the Chicago Art Museum.

Throughout the film--at the circus, visiting museums, or in painting workshops conducted at day care centers, nursing homes and assisted-living facilities in Europe and the US-- the hopeless, fatalistic, nobody's there stereotypes of Alzheimer's sufferers is unequivocally denied.  We continually witness people with serious memory problems being brought back into active communication and a rich quality of life.  This is more than busywork arts and crafts: trained professionals knowledgeable about both art and Alzheimer's are providing essential treatment "just as effective if not more so than the drugs."  The benefits of the non-pharmacological along with the pharmacological not only extend life, but create a life worthwhile, where people find meaning and connection.
 
In direct interview, voice-overs and interacting with "patients" and their family members, eminent experts from multiple medical fields - neurology, gerontology, psychiatry- punctuate the film reviewing the latest technologies and concurring that the essence of the person lives on. The latest brain research provides evidence that the parts of the brain related to emotions and creativity are largely spared by the disease and that our technologies for assessing dementia --dealing with sequencing things, dates in order, and what one did this morning--rely on short term memory which is totally irrelevant when enjoying a masterpiece or listening to a symphony.  The documentary also includes comments from art therapists, occupational therapists, directors of specialized care facilities, but the film is anything but talking heads.  The cutaways and extensive footage of the care giving staff and specialists interacting emotionally and physically, visibly bonding with the residents and family members is sincere, loving and inspiring professionalism.

The inspiration for the film and project is filmmaker Berna Huebner's mother, Hilda Gorenstein, once an accomplished painter known as Hilgos.  In one of Huebner's visits to the nursing home, she asks "Mom, would you like to paint again?"  Quite unexpected came the reply, "Yes, I remember better when I paint."  Learning this, the staff psychiatrist who had been prescribing small doses of a tranquilizer for her apathy, anxiety and agitation suggested Huebner enlist art students from the Chicago Museum school to help her mother to begin painting again.  We are not spared the slow and sometimes discouraging process as Mrs. Gorenstein comes alive regaining mobility and communication skills and interacting--bonding-- with the art students.  The film is replete with her colorful paintings created in the next few years until her death at age 93.

"The creative arts are a doorway.  Once that doorway is opened ... things are tapped ... that are genuine and active and alive that don't get tapped in our normal day social interactions when we sit at a table and make conversations over a meal or we read a newspaper article and then talk about the headlines of the day.... The creative arts bypass the [cognitive] limitations and simply go to the strengths. People still have imagination in tact all the way to the end of their disease."

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Summary:

McMurphy (Jack Nicholson) escapes work on a prison farm by feigning mental illness, but he finds himself in a far more coercive institution than the one he left behind. The other men, both sane and insane, are just like him: they hide in the locked ward from the law, their families, or the despair of their own lives.

McMurphy animates the dull monotony with fractious games, pranks, and excursions, but he encounters stiff opposition from the head nurse, Mildred Ratched (Louise Fletcher), whose system provides her with pills and electroshock to maintain control. When the nurse discovers that McMurphy has smuggled two women into the ward, she threatens to tell the mother of young Billy (Brad Dourif). Billy commits suicide and an enraged McMurphy tries to strangle Ratched. McMurphy is lobotomized and returned to the ward only to be smothered by his friend Bromden, who then escapes.

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